Autistics Speaking Day Is November 1, So It Is (Really) Time To Listen

Autism has its own version of "pinkwashing," the term to describe low-commitment efforts to 'bring awareness' to breast cancer. In the case of autism, the analogous word would be 'bluewashing,' which is appropriate because the organization that links autism and the color blue is well known for its depressing, negative approach to talking about autistic people.

Maybe you've heard of Autism Awareness Month and Light It Up Blue, campaigns no doubt as effective for autistic people as the the color pink and Pinktober are for women with breast cancer. Both lightweight, easy buy-in efforts (put on a ribbon, flip on a blue light) might be rainmakers for the organizations that sponsor them, but their direct positive effects for the people they purport to help are more difficult to discern.

April, a.k.a., 'Autism Awareness Month', can be the cruelest month for autistic people who aren't the biggest fans of Autism Speaks, which developed 'Light It Up Blue'. To add some insult to that injury, a few years ago, a well-intended group in Australia called for people to 'mimic the communication deficits' of autism by participating in a 'Communication Shutdown' campaign, a voluntary silencing on social media to reflect solidarity with autistic people. What those launching the campaign in 2010 failed to recognize is the critical role that those tools and online access play in autistics' ability to communicate. Just a few questions to autistic people would have made that clear.

The slogan of Autism Speaks is "It's time to listen." But autistics, including John Elder Robison, the sole autistic person they ever had in a leadership role in the organization, have long argued that the organization never, ever listens to them. Indeed, the organization's refusal to acknowledge the voices of autistic people has made a mockery of that phrase.

The group has always attracted its fans. But some potential adherents have looked more closely at Autism Speaks and seen the clear failures of communication, perspective-taking flaws, and, shall we say, absence of empathy that many think are features of autism itself. And those with a critical eye -- and ear -- have done what Autism Speaks urges -- listen.

Well I know that Carson had a really big moment. Right off the bat we were getting involved with Autism Speaks, I think because we wanted to do more. And there was going to be one of the walks in Portland. And Carson started gathering money and sponsors for her and my sister to do the walk, in Hank’s name, and she actually ended up raising the most amount of money as anybody in Portland. She was the top earner, the top fundraiser in Portland. I was on tour at the time. But when she went on the walk she noticed a bunch of autistic people protesting, which was incredibly eye-opening.

And then, they realized that the absence of autistic representation was significant:

You think you’re doing this thing for the autistic community and yet there are probably very few autistic people in the march, in the walk, and they’re all on the other side of the kind of the picket line protesting, something must be up. We talked about this and started doing our own research, and then started seeing how Autism Speaks functions and the methods it uses to raise money – and that was sort of an immediate red flag to us. This is the most obvious and vocal autism organization – there must be others, there must be another voice somewhere. So who is the voice for the people who are protesting these walks?

ASAN, the organization that Ari Ne'eman started, is one of the big autistic voices out there. They're methodically effective in communicating messages about autism from autistic people, with increasing representation in news stories about autism. These voices are important for non-autistic people to hear, and not for "PC" or social justice warrior reasons but for practical reasons.

As much as some parents argue that autistic people who can communicate online are "not like my child," the fact is that an autism diagnosis is based on factors that all autistic people have in common. We listen when bipolar adults talk about their bipolar conditions, even though bipolar conditions and the people who are bipolar vary considerably. We listen--or we should--when women talk about what it was like to be a girl and what it's like to be a woman, even though women have a wide range of individual differences. We listen because of their commonalities, not their differences.

And we should absolutely listen when autistic people communicate their experiences of the world through their internal lens of autism, on stages big and small. It helps everyone become aware of what being autistic is like and the struggles and positives that autistic people express, and it gives younger autistic people older role models who understand and can interpret their mutual experiences.

This kind of real, practical awareness that goes far beyond flipping on a blue light can lead to genuinely effective ways to help and support autistic people. Indeed, it already has. Even the autistic character Sesame Street just rolled out is someone whose behaviors we're encouraged to accept and understand, not 'fix.' Anyone who's been engaged for even a few years with how the world sees and talks about autism will understand the significance of that change. That ASAN had input into the development of that character (as did Autism Speaks) is no coincidence.

Autistic people, like those protesting Autism Speaks events, do have a voice. A significant, important voice. On the first of November, many of them plan to use those voices. Give them a listen. Really.

My book with coauthor and Forbes contributor Tara Haelle is "The Informed Parent: A Science-Based Resource for Your Child's First 4 Years." It offers the latest scientific research on home birth, breastfeeding, sleep training, vaccines, and other key topics—to help parents ...